Week 96

17 October, 2010 

This has been an amazing day. After wonderful treatment from the nursing staff, Pauline’s Mum has suffered attrociously at the hands of the doctors and consultants. She has been nil by mouth for over 24 hrs. The consultant visited her ward but ‘overlooked’ visiting her’ in his own words. I got hold of the email of  medical director for the Oldham NHS Trust and contacted her. By coincidence or not, we received a phone call from the ward sister 20 minutes later inviting us in. At 8.30 am we left for the hospital. She is sedated but alert. She has a protusion on her abdomen – a hematoma – which has to be operated on. The complications of that are her age at 96, the fact that she has just had a heart attack and that she is currently taking a blood thinning drug. However, the alternative is unthinkable and agonising.

Pauline goes in search of the consultant who missed her out yesterday. He turns out to be a nice man who deals with stomachs and not hearts which is why he missed her on the heart ward. He gives her more morphine and sends her for another CTC scan. Eventually, he tells Pauline that she needs an operation which, at her age, is most likely to kill her. Other than that, she will die in agony over the next week. There is no choice. Unbelievably, they demand that Mum gives her own oral and written permission for the operation. She does both confidently. She removes her teeth and puts her hearing aid in ready for theatre. Pauline and her sister, Phyllis, and her daughter, Mandy, say goodbye to her and she is wheeled to Theatre.  Two and a half hours later she is wheeled back past them and the surgeon puts the thumbs up saying, It’s all gone very well. He had removed a blood-filled hernia and then noticed a blockage in her bowel. He removed part of her bowel which had turned gangrenous and reconnected the bowel successfully. A heart attack a week ago may have saved her life.

By the time she was back in the High Dependency Unit, she was fighting to get up. Pauline had to restrain her. We left her to sleep and all drove home absolutely elated. I opened two bottles of Pinot Grigio from Ancona and we polished that off in minutes before tucking in to bacon sandwiches.

18th October, 2010 

The high of yesterday made the 6.30 am phone call from the hospital even harder to take. We were told that she had deteriorated rapidly in the past two hours and we should attend immediately. I bundled Phyllis, Colin & Pauline in to the car and drove them down to the hospital. Pauline’s Mum was conscious and talking. She told them that they had both been good daughters. They held her and kissed her and talked to her for five hours and then she died. If only it could have been like that with our Mum.

19th October, 2010 

Today is wet and dark. Pauline & I have finished phoning all who need to be contacted. We have to collect the Death Certificate this afternoon and then go and register the death at Chadderton Town Hall. Pauline’s Mum had organised and paid for her funeral some years ago. She and her friend, Angela, had taken out The Golden Charter Funeral Plan costing £1740.00. Basically, everything has been done for us. All we have to do is inform every one and arrange a get together afterwards. This will be in the lounge of the Anchor Housing flats she lived in. The catering will be done by the lady who comes in to cook them all lunch three times a week. Once again, I have to make a speech. I am gathering material for it now.

Today we had to put the milk money out for the milkman who called every day. Mum was very particular about how it was done and the money was already counted out in a brown envelope in the second drawer down of the dresser. The little brown envelope had to be put under the plant pot just outside her flat door where the milk was left. The milkman would look for it but he wouldn’t be surprised if it was accompanied by a pot of jam. Mum had problems with her hands from chronic arthritis or Arthur as it was known and from an industrial accident. As her strength failed, she couldn’t open jars. She would leave a new jar of jam out and the milkman would open it for her as he left the milk. All part of the service for Lady Jane as her doctor called her.

20th October, 2010 

Had lovely support from family members. Liz read the Blog and alerted Ruth to Pauline’s Mum’s condition. Ruth phoned me and then clearly alerted other members of the family. I had a lovely email from Bob:

John
I am so sorry to hear that Pauline’s mum has died.  I’m sure you are both coping with the situation but it is a sad and difficult time.  If there is anything I can do to help in any way just let me know.
Best wishes to you both.
Bob

and another from Catherine:

Hi John and Pauline
I heard your sad news from Ruth-hope you are supporting each other and I send my thoughts and love to you both.
Love cathy xx

I replied but I just hope they know how much it meant to me.

21st October, 2010 

A mawkish day preparing funeral details:

• Putting an advert in the local paper
• Preparing and order of service leaflet
• Arranging extra cars for people
• Arranging catering

It all feels bonkers but it has to be done. I have had to write the eulogy which I am being made to make. I have also had to prepare photographs for documents. These will be on the front and back of the order of service:

22nd October, 2010 

I have been in contact with the Medical Director. This is what I wrote to her in Pauline’s name:

Thank you for taking the trouble to reply and to look at the problems we were having. We now know that the problems we were experiencing with our little old Mother were not isolated to her or to us but appear institutionally present across Oldham Royal.

Jane Barnes, our Mother, had fought her way to 96 years old. She was immensely proud and amazingly independent for her age. However, as with any 96 year old body, bits started to fail and fall off. She had a pace maker. She had a cataract operation. She had a tumour removed from the tip of her nose. As she became less active, she developed problems with her legs and, in her final years, she suffered a great deal with bowel problems. We made numerous fleeting trips to Oldham Royal to have these problems attended to and occasionally Mum would spend a couple of nights in hospital. Mum didn’t want to go and was always desperate to get away but she would acknowledge, as we do, the wealth of lovely, genuinely caring people she came across in the course of her time there.

What we were not happy with was the lack of Joined-Up Management of the environment within which these people were desperately trying to offer a good service to us. Every time we came to the hospital, we waited in a cubicle for someone to come and ask the same questions – often fairly platitudinous and condescending – as she/we were asked three or four days earlier. The answers were always recorded long hand on paper and when we pointed out the fact that this information must be on file, we were invariably told that The file hasn’t come back from the other Department yet. There was and still is a distinct lack of rigour in information management across the hospital which slows down the treatment of patients.

Ten days or so ago Mum had a heart attack and was admitted to hospital and found herself on Ward F2. She didn’t want to be there and she was desperate to get home but she knew she was being extremely well looked after by nurses who were overstretched and didn’t have a spare minute. Because Mum was so independent and determined to look after herself whenever possible, the ward staff responded to her very positively. She couldn’t speak more highly of them nor they of her. Her heart problem was stabilised with drugs and we were about to bring her home on Saturday when she suffered a terrible night of agonising pain with her bowels which had caused her immense suffering for a couple of years.  I sat with her in the ward until late Friday night/early Saturday morning until she underwent an x-ray. I had to personally fight hard to get doctors to visit the ward. That is inexcusable.  A large protrusion, thought to be a hernia, appeared on Mum’s abdomen and she was in agony. If Mum roared with pain, you knew she was in agony. She was incredibly tough and long suffering. Eventually, after a lot of agitation from us, Mum was put on a drip and given much needed pain killers – progressively leading to morphine.

Visiting her early on Saturday morning, she had been made nil by mouth by a 7.30 am Ward Visit and was informed that she would be seen by the surgical team during the morning ward round. This didn’t take place. The pain was under control and remained so throughout the bulk of the day. In fact, she was quite chirpy. When my sister visited at midday, Mum was still expecting to be seen by the Surgical Team and told my sister to leave by 2pm as they were due to arrive then but that didn’t take place either. Eventually, I was told that she had  been “overlooked” and apologies were profuse. By seven in the evening she had deteriorated badly and she was in extreme pain, still nil by mouth and crying out for water which she was refused. She couldn’t even have her lips moistened or take her medication. In fact Mum was extremely anxious that she had not been given her heart medication as she believed it would cause her heart to worsen again. The ward nurse, Lorraine was very upset because she had been ‘bleeping’ the doctors for many hours for attention for Mum but she could get no response. I actually stood with her while she bleeped to no effect. Once again, that is inexcusable.

By this time, we were getting frantic. We threatened to escalate the situation by demanding to see duty team management and we were told that no one knew who it was because it was the weekend. I threatened  to go to A&E to declare an emergency situation and the ward nurse frantically bleeped the doctors again. Eventually, a very young girl – a doctor looking like a Top Shop Assistant – arrived and with no urgency asked fairly inconsequential questions. She was clearly out of her depth. She appeared quite scared and her interpersonal skills were dire. She could take no executive decisions. She said she would need to speak to her Registrar. She left but no Registrar turned up. We were told that a doctor would be with us in ten minutes. They weren’t. The young doctor also informed me that the medical teams and the surgical teams do things differently and she could not intervene in their systems, she could only consult her Registrar. After half an hour we were told it was too late for a visit from the current surgical team because there was about to be a change over of surgical teams at 8.00 pm..  My niece and I went out into the corridors and grabbed the first doctor we could find. We told him the problem. He advised us where to go to find out who was the On Call Consultant if the Registrar or a member of the Surgical Team didn’t come down. Afterwards, he told us to complain strenuously. Communication and urgency of action between sections appears to be a major weakness.

Two hours later, at 10.00 pm, a doctor from the surgical team arrived and examined Mum. He said he thought she needed an operation but he would have to refer to the consultant who was at home. He arrived just before midnight when Mum had been nil by mouth for about 16 hours. We were then told she could have sips of water until 3.00 am. This was really distressing Mum and greatly raised the anxiety of the situation. The pain was managed and we returned home.

When we arrived at the hospital early on Sunday morning Mum was told she would have to take on a large amount of solution prior to having a CT Scan. Nurse Lorraine had to query the solution sent to the ward because it was one for injection not imbibing. She said that this was quite a common sloppiness in the system and was one reason she was leaving the hospital. This delayed the 10.00 am scan while we waited for the correct solution and Mum had been nil by mouth to all intents and purposes for about twenty six hours. I have to conclude that this extended period of denial served to weaken Mum and engendered considerable anxiety both in her and in us. Once again this is inexcusable. The scan demonstrated that an extremely risky but largely unavoidable operation was required. The risks were fully spelt out. We understood and Mum did. We made a fully informed decision together and the operation went ahead. The surgery was completely successful but Mum’s 96 year old heart couldn’t sustain her and she died around midday on the Monday. Although we shouldn’t have been surprised, we can’t help thinking that the context of the operation in which Mum had been nil by mouth for so long and desperate for sustenance and her heart medication didn’t provide her with the best platform from which to fight the stresses of a serious operation.

All patients and their relatives are naturally stressed by illness, hospital environments and operations. They do not need and should not have the additional stress engendered by dysfunctional management of the process. How can it be acceptable or justifiable for desperate ward nurses to be calling for doctor attention  not just for minutes but for hours without response? How can it be acceptable or justifiable for relatives to have to feel it necessary to take matters in to their own hands and to start charging in to the corridors desperately searching for help? Where is the discipline in this service and where is the management? Nurses and Doctors we met in the hospital were very critical of the process that was clearly failing us and gave us the impression that it was very common in Oldham Royal. They also said that it was exacerbated by being the weekend. So many nurses said, Don’t get ill at the weekend in Oldham. How can hospitals have weekends? Do the population of Oldham really need to be ill only during the week?

The lack of urgency shown by doctors in response to requests for help by the nursing staff was equally mirrored when it came to getting the death certificate. We made three different appointments with the registrar’s office while waiting for a doctor to get round to signing the certificate. The lady in the hospital office said she always had to continually bleep to get doctor attention and assistance and was often ignored. When a doctor did arrive, she was totally unprofessional in appearance with skin tight jeans and ballet pumps and, just like Top Shop girl on the ward earlier, she displayed no urgency or people skills and ignored us completely. How can it be reasonable to demand professional dress for nursing staff but not doctors? Patients and relatives need their confidence in professional staff to be bolstered not undermined. It seems to be indicative of the lack of discipline in the hospital.

We do not want you to consider this as a formal complaint. It is not. Indeed, to do so would be an insult to the wonderful nurses who cared so hard for Mum and to the surgeon who was prepared to take on such a high risk operation and to give Mum the fighting chance that she deserved. What we do want is for this to be seen as the observations of an end user on her local hospital in the hope that conclusions can be drawn and changes made to the service provision.

The hospital phoned back and invited us in to meet the management team.

Went back to see our old neighbours who had received some post. It was our new, ten year passports. The photos are awful. Nowadays, you cannot smile or have hair covering your ears. Pauline was mortified. While we were there, we went up the garden to see the rock fall. It looked as if our old shed had been deliberately targeted. It was flat as a pancake.

23rd October, 2010 

Today, I had a morning appointment with the diabetic opthalmic consultant. She is gorgeous – Ms De Souza. Unfortunately, she has signed me off saying she doesn’t need to see me again.

We went on to the Letting Agents to find out when our flat will be available. It is ready on November 8th and we hope to move in by the 10th. It will be nice to be settled for a while.